Monday, 12 November 2012

In between trying to keep up with BBC resignations and writing obituries
for Newsnight, the frenzy around recent revelations about child sex
abuse in the UK has also centred a lot of attention on anonymity.

The
role of anonymity in sex crimes cases has always been a red button
issue. Victims and alleged victims of sexual crimes are guaranteed anonymity under law in the UK. They cannot in any circumstance, not even
under parliamentary privilege Lord Campbell Savours, be named in
public. This is in fact a criminal offence, punishable by a fine, as
seen last week by the case of 9 people who named the victim of Ched Evans. This anonymity is extended to victims of historic abuse and child
sex abuse no matter at what age they report or speak out.

Currently there is no guaranteed right of anonymity for those
accused of sexual crimes. This was in fact abolished by the Tory
government in 1988. It used to extend to everyone accused no matter what
age the victim was. I've blogged before about the current government's
aborted idea to reintroduce anonymity for those accused of rape against
adult victims and while I still acknowledge there are big flaws with that proposal, I remain generally convinced that while emotions are so high
and the system so poor, anonymity for accused but unconvicted sex
offenders should be considered again.

I'm afraid I just don't buy the line that if we kept people's names
anonymous before conviction it would affect the rate of conviction
because other victims couldn't come forward. Well, I don't know if
you've noticed, but the conviction rate is pretty piss poor under the
system we've got right now. Even in cases where multiple victims come
forward with identical allegations, they get ignored and nothing gets
done. The John Worboys case did not get the conviction it did because
the police allowed his name to be put forward. It didn't even get to
court because of the number of victims involved. It got to court (as did
Kirk Reid) because one officer pieced together several allegations over several years and because the Met held an internal investigation into the
entire Sapphire Unit based around six cases and it became apparent that
there was so much evidence against Worboys and Reid that the CPS
couldn't not prosecute. But here's the thing, all that evidence was
already there. It just hadn't been taken seriously until the Met was
forced to investigate itself.

Both men were convicted with a clear jury majority and very little
deliberation and sentenced to comparatively long sentences for their
crimes. Only then did the police release their names to the public and
appeal for further victims to come forward. They and the courts had used
the current rules to suppress the name through reporting restrictions
prior to conviction (basically to cover the Met's arse so their failings
didn't come out in such an obvious way.) Countless more women came
forward as victims of both men. No futher court cases have ever
happened. But somewhere along the line, the Worboys case has passed in
folklore as the example of how anonymity for the accused prevents
convictions. The Met trot it out a lot, but then again, they're
desperate to make themselves look good over Sapphire in any way. But annoyingly I see many feminists parrot the same line unquestioningly. I
think I remember the whole PR episode slightly differently over both
trials as my case was one of the six and I spent time dealing with both
the Met and the press over that time. Not once did the Met mention
either name even in private meetings with me about the issue nor did any
of journalists who contacted me wanting a victim's perspective about
police failings. In fact I was specifically asked by several journalists on both cases about the fact the names had been withheld
until conviction.

I'm not going to re-hash the stuff from the previous post as I think
I made myself clear, but I've had new concerns about anonymity since
then. The Savile scandal broke because Karin Ward was brave enough to
come forward to Newsnight and speak out while waiving her anonymity. I
applaud her for a decision of unbelievable bravery. But I also have a
worrying feeling about the precedent it set in the media and the
public's perception (none of which is Karin's fault.) It transpired that
there had been constant suspicion and accusation against Savile for
nigh on forty years. But it wasn't really taken seriously until someone
spoke out fully identifiably, creating an idea that unless a victim is
prepared to waive anonymity, their allegation isn't worth listening to.
It's raised the stakes. It's now not enough speak up, recount painful,
traumatic and desperately personal details, fight your own corner with
the police and CPS and in some cases, submit every single centimetre of
your body to forensic examination; now you need to declare your identity
to all as well.

Well, some of you might say, if you're going to accuse someone of a
terrible crime, you should be prepared to face them and them know who
accused them. But that misses the point. Anonymity only refers to public
anonymity. The police, the CPS, his defence team, the judge will all
know who you are. The fact they take pains to prevent that information
being easily ascertained in court documents or to the public gallery
doesn't prevent you as a victim having your entire life picked over to
persue a court case or your attacker not knowing who brought the case
against them (because it's the Crown that brings the case. Not the
victim. They simply become a witness to the case.) All I see that comes
out of waiving anonymity as a pre-requisite of an allegation being taken
seriously is that allows more opportunity to measure that survivor by
the arbitrary rules of the 'perfect victim' and since they are humans, not textbook examples, find them failing. This
allows society to be more likely to see victims as liars because they aren't matching the preconceptions people have and become hostile to them.

And not just that, I think it actually does the opposite to what the
people who are so worried about false allegations and people's
reputations being needlessly ruined want. It adds a gossipy
salaciousness that actually encourages trial by media and public instead
of considered trial by evidence. Look at the feeding frenzy over Savile where the
tabloids and gossip magazines have chased up every celebrity woman
Savile ever worked with and shown endless clips of him making Coleen
Nolan look like she wants to be sick as he manhandles her. It doesn't
actually validate the victims' abuse, but turns it into a spectator
sport ripe for comparison to everyone else's life. It actually minimises
the experience and bravery of survivors to do this because obviously no
footage exists of the rapes and more serious sexual assaults, so people see
Savile paw young women on primetime telly and think that's all there was
to it. Cue loads of people recounting the time some creepy old bastard
felt their arse and you didn't see them running the papers or police,
looking for money.

Oh yes, money. People who have never been sexually assaulted by
someone rich, famous and powerful seem to think it's akin to a good tip
on the gee-gees and a surefire way to get some cash. It never occurs to
them that the majority of victims speak out because they are trying to
defend themselves, seek justice and be heard after assault has rendered
them invisible. They think they just want a pay out and it's all about
greed because being attacked by a well known person is actually a
blessing, not an incredibly traumatising and isolating experience. They
have no idea that it's actually incredibly difficult to get compensation
for sexual crimes as you must fit very exacting criteria, including not
allowing the police to 'no crime' an allegation, the attacker not be
dead and that victims of child sex abuse who 'consented' are already
excluded from the criminal compensation criteria. They could of course
persue a private case for compensation from their attacker or their
estate, but legal aid for such cases have been withdrawn so they would
have to pay their own costs upfront for a case that might rumble on for
years and that has no guarantee of success and could leave them bankrupt
as well as traumatised. As ways to get rich go, it's about as failsafe
as a trip to Ladbrokes, but you don't get free tea or coffee.

And if you do get awarded any form of compensation, you will have
your character further assassinated and see even more gossipy interest
in the person who attacked you. Sunday's hatchet job by the Mail on
Stephen Messham mainly seems to focus on the fact he was compensated for
the systemic abuse he suffered as a child. Put bluntly, where there's a
payout, there's guilt. No one pays out thousands of pounds to someone
who alleged sexual abuse unless something happened. So when Messham
spoke out about a senior Tory abusing him, everyone knew there was a
story. Newsnight knew who Messham was (obviously) and because he'd
spoken out before using his identity, they could build a report and a
backstory without even checking things with him. His payout was their
guarantee he'd be taken seriously when they broadcast the piece as it
showed legitimacy as a victim. It's also the very thing that the Mail
and David Mellor and others have used to slam Messham now that it has
come out that he misidentified the Lord in question.

Declaring his identity and refusing to be shamed by being a victim
has been used as a tug of war over Messham with both camps pulling and
pushing and leading to an appalling situation where the victim has had
to apologise and everyone else escapes blame and navel gazes. Newsnight
knew fine rightly that the teaser of an identifiable victim, a political
connection and society's need to look like it was being tough on abuse
would lead to people naming names without proof. And they did in droves.
Some did it because they genuinely thought they were protecting
potential victims, others did it because their desire for gossip and
political point scoring was greater than the desire for justice, some
wanted to bait the PM and get good ratings. But the name of a man who
did not abuse children got put out there and burned down the Bush
Telegraph of the internet.

Everyone should have known better. They prejudiced any potential
trial, they showed themselves to be shallow and not really concerned
with the victims, they slandered the accused's name and they destroyed
the reputation of the abuse victim. It was a perfect storm of
supposition, presumed certainty and intrigue and in my opinion, none of
it would have happened if Stephen Messham hadn't been identified so
clearly. I don't know if he wanted to be identified for personal reasons
and I respect him if he was willing to do that, but what I object to is
Newsnight allowing him to do that without checking the details properly
because what they did was make him the face that people associated with
the scandal so when it went tits up, no one had an image and a name in
their mind for the editor of Newsnight. Entwhistle might have gone over
it, but it's Messham people are writing personal pieces about it that
dredge up his life, family history and reputation. No one's asking if
the middle class Newsnight editor involved might have become an attention seeker
because his parents sent him to piano lessons at 8.

Newsnight had a duty of care to a traumatised man with a
history of serious psychiatric problems and they fucked up completely. I am not
suggesting that survivors are fragile little flowers who should be
treated as damaged goods who cannot have opinions and speak for
themselves, but I am suggesting that the media doesn't just run for short term ratings and hang a victim out to dry to get them.
They should talk through the potential consequences and offer support if
the survivor still decides to speak out with anonymity. But that's not
happening. I've done a lot of press over the years about my rapes in
various guises and still do if I feel it is helpful. It used to be very
very rare to be asked to waive anonymity, but it has become increasingly
standard. Just last Thursday I was asked (indirectly, not just me)
through the women's org I volunteer for to speak to Glamour magazine,
but only if I agreed to be photographed and identified. Cosmopolitan and
Grazia do the same. Personally I don't think the organisation should be
asking their clients to do this even if it guarantees publicity and
funds for the scheme and I declined, stating that fact. If a survivor
wants to speak out using their identity, then I'm not going to stop them
or criticise them, but I'm going to speak up about the press
blackmailing us by only covering sexual violence if anonymity is waived.

That makes me hugely uncomfortable. It plays into many rape myths
and the idea of the 'perfect victim' in a very unhelpful way. Women's
magazines will only feature the 'right' person: pretty, thin, white,
middle class, probably had a conviction in their case or an 'acceptable' type of rape
such a stranger/stalker rape. Not for
the glossies will women who might fat, trans*, gay or bi, sexually
active outside a relationship, working class, drink alcohol, take drugs
or have been groomed be rape victims. Men will continue be invisible as
victims and women will continue to minimise their experiences as 'not
real rape' and so not seek justice and blame themselves not their
attacker. The fact that 80% of victims know their attacker will be
ignored and we'll continue to be asked to change our behaviour, not
tackle rape culture and patriarchy. Cosmo will carry on printing 'good
news' rape stories even though they seem to have relaxed their policy on
only featuring victims who aren't single because to them rape isn't the
tragedy, it's the fact you might end up single because of it. Much
easier to push the idea that the thing to help you overcome the actions
of a man attacking you is to find the love of a good man rather than
seek to campaign for justice and resources, speak up about the culture
that silences victims and allow women especially to support each other.

You, in this day and age of the internet when all prospective
employers and partners Google you, are asked to permanently link your
name to the crime committed against you so that a magazine or TV show
gets its prize and moves on. It's actually long term victimisation that
never allows survivors to move on and rebuild their lives. It's
condemning them to be 'damaged goods' and feels like punishing them for
speaking out like seems to have happened to Dominique Strauss Kahn's
victim in New York. And it's not strictly neccesary to get the message
out. I have successfully spoken out widely and never revealed my
identity. 99% of media (print, radio and TV) have been very happy for me
to use my alter ego Helen Jones and never asked me to reveal the real
me. In fact I considered doing so over my compensation and the BBC journalist refused to take the case if I did. My family also asked me
not to since we have such an obvious name and my solicitor advised me
not to. Plenty of people do know who I am and yet they've never exposed
me or accidentally revealed me and in hindsight, I'm glad I didn't
expose my identity when actively campaigning. But when I was utterly
possessed by the need to be taken seriously and heard by someone because
the police had let me down so much, I could very easily have thought
that it was the magic bullet to declare my identity and done so, only to
have been left to deal with the consequences by myself for years to
come. The media can be very persuasive and I'm concerned they sell a
scenario to trusting and desperate people who think the reporter really
really cares because they've spent hours listening to your story and I
think anyone who waives anonymity should have some support and advocacy
when doing so.

But the media also has a role to play and that
role is to stop putting pressure on survivors and seeing them only as
the means to an end. I'd like it if we could expand the discourse on
sexual violence and get people talking about it more, but ultimately I
think in this case it would be better to have less said in the media,
but much better than risk repeating the truly cavalier attitudes of
recent weeks that have put survivors under unbearable pressure,
threatened innocent people's reputations, made it easier for guilty
parties to hide in the shadows and made it more overwhelming and
difficult to report rape of any sort. I'm not suggesting anonymity for
both parties would solve all the problems of this rape culture and
everything will be glitter and kittens in comparison, but the situation
isn't working right now and no one in the media, let alone Leveson, is
addressing it any other way so I'm not sure what else can be done that
makes an immediate difference?

Friday, 12 October 2012

The last few weeks have been a maelstrom of relevations, triggered (in
more ways than one) by the Jimmy Savile scandal. Details of abuse,
grooming, cover ups and a widespread sexism and misogyny that allowed
such things to happen as if unseen have been flooding out and leading
the whole country to stop and examine the situation. There has been more
talked about Jimmy Savile in the past three weeks than he ever deserved
and a lot of soul searching about society, but the one thing everyone
keeps saying is 'why didn't anyone speak up before now?'

We all know the answers. What chance would a girl from an approved
school or Broadmoor have had if she'd spoken up against a man draped
with honours from the British Establishment and Catholic Church and who
spent Christmas with the Prime Minister? None. She wouldn't have been
believed for one second. And so these victims remained abused by the
visibility of their attacker and he carried on unchecked and growing in
confidence with every year.

You shrug and say 'but that's how it was then. Things have changed
now.' And I say that, no, they haven't. Women still live their lives in a
culture where the default setting is not to believe them. And not just
about rape. About everything. This runs on a spectrum of 'you're
lying' to 'are you sure?', taking in destinations such as 'I think
you're overreacting' 'well, I haven't seen anything' and ' why don't we
wait a few months and see what happens?' It happens whenever women try
to report anything that happens to them from a particular Pill causing
problems or periods being painful (it on average takes 8 years to be diagnosed with endometriosis), or their child just not seeming
right in some way, to saying that that comment in the street wasn't a compliment or
that when their partner does certain things it scares them. Their word about
wanting or needing an abortion has to been agreed by two doctors while a
declaration that you don't want kids is always accompanied with the
order that 'you'll change your mind.' Women are constantly seen as
unreliable at best, deceitful and out to destroy someone at worst.

And yet the irony is that the destructiveness of disbelief affects
women primarily. They are the ones who live with the consequences of
being disregarded, maligned and told their word is neither valid nor
valuable. This has the effect of silencing women everywhere in life.
It's very hard to stand up at work and suggest something unknown or
risky with conviction when you're constantly being told you're not even
an expert on yourself, your life and your body. This undermining seeps
out into the rest of society. Men learn that their word is always seen
as more important and often feel cossetted by that protection. Girls,
who are seen to combine the silliness of children with the duplicitity
of grown women are left horribly vulnerable and boys internalise that
being seen to be girlie in anyway is the worst thing that could happen
to them.

Being believed is like being scooped up in the strongest pair of
hands. It's like being attached to a harness and rope while climbing the
unpredictable rockface of life and knowing that you can hug tight or
take a risk and swing out and that you will be fine. It builds
confidence, it forms a barrier than makes it hard for the corrosiveness
of self doubt and loathing to errode. It allows you to pick yourself up
and face life without having to waste time and energy on fighting your
way just to be heard let alone your actions acknowledged. It's vital to
be able to heal and move on from painful paralysing experiences and
unlike complicated interventions, it's free and easy. It just relies on
kindess, humanity and being a decent person with a certain amount of
humility.

I have faced a lot of disbelief in my life. The most striking
example, of course, was trying to report rape. The first time, there was
just a wall of doubt and denial driven by the fact that my attacker's
uncle was well connected and there was a delay in reporting. I'm not
stupid. I knew that not being able to produce forensic evidence would be
a stumbling block. I half knew that reporting wasn't going to go
anywhere, but having been told that what I was saying was unladylike by
the woman at Victim Support (who could barely hold the phone for pearl
clutching) and then having my GP refuse to note the assault on my
medical notes, I needed an acknowledgement, some visible marker of what
had happened. It was too much to comprehend that my whole life had been
turned upside down and yet there was nothing tangible to see. I presume
this is a similar emotion that women who have had miscarriages and
stillbirths feel and why momentoes, photos and death certificates are so
important? I wanted someone I could trust, who was impartial and who
could be proactive to say yes, this happened. I needed to be believed. I
simply couldn't believe this had happened and I needed permission to
let myself start addressing it in order to make sense of it.

Instead I got total hostility, enhanced with sneering and judgement.
I could come to terms with him not being punished as long as they'd
investigated. Investigating is a form of belief. Ultimately I'd have
liked the bastard to face some consequences, but I could more easily
have come to terms with being told 'I'm sorry. We believe that he did
this to you, but unfortunately because we can't find this evidence/the
law doesn't allow/we can't prove it, we can't do anything, but we'll
bear it in mind.' It would have taken less time that the lecture they
gave me and I'd have gone away feeling something had been done, even
though really it hadn't. Call it placebo policing. Call it being half
decent to a traumatised victim. It certainly wouldn't have left me
feeling so angry and helpless and fucked up.

I think I could have coped with that disbelief, and the version
a few months later when the police seemed to believe I'd been raped that time but
not that I deserved anything being done about it, if it was an isolated event, but disbelief
was coming from everywhere and had been for years. Since the age of 14,
I have suffered from nausea almost daily and then strange abdominal
pains. I went to doctors repeatedly and was told it was all in my head,
was I sure I wasn't pregnant?, it was lady trouble, growing pains, just
something I had to live with and a multitude of other disbelieving,
don't give a shit responses. Of course, it wasn't any of those things.
It was gallstones and the offending organ was whipped out in 1996 and
the problem was solved.

Except it wasn't. The nauses remained, now joined by literally gut
wrenching diarrhoea and unexplained pains. After months of strong
painkillers and hospital visits, the pain was found to be secondary
stones. All fixed. Except that 16 years later my life is still dictated
daily by nausea and diarrhoea. At least 9 GPs have disregarded it,
telling me it can't be that bad (despite admissions to A&E on
occasion and extreme weightloss at times), that all women get a bit of a
dodgy tummy at that time of the month, I'm attention seeking, I eat too
much fat/too little fibre, I've only got IBS and even though I'm medicated for both
conditions, I don't really need it but they're just humouring me because
after all it's well documented that I'm mental these days. Desperate
and unable to work because of it, I asked to see a gastroenterolgist for
6 years and was refused time and time agian. I wanted to argue, I
wanted to stand up and say 'listen to me', but having been disbelieved
that I'd been bitten, that I'd been raped, that I was really properly
homeless, that I'd had no real investigation by the police, that I
really really did want to complain about the police, that my drinking
hadn't caused the second rape, that I qualified for benefits, that I
needed psychiatric help, that I was ill, that I was worth being helped,
that I wasn't looking for attention, I just couldn't find my voice for
that. I took the pills and carried on dealing with everything else.

And I met some people along the way who don't ask for explanations
and justifications, but who just believed what I was saying. My
solicitor who backed me to the hilt over my compensation claim and
practically used her buff folders as pom poms as she cheered me on to claim the compensation that was a tangible acknowledge of what had happened. The
therapist at the Chronic Fatigue clinic who convinced me I was ill and
not just imagining it. The employment advisor who heard me say I'd never
work again and who believed me that I felt like that while believing I still had a lot to offer.
Friends who didn't quiz and query and question, but just accepted me
warts and all. And eventually I felt ready to stand up to the GP who was
blocking me and move surgeries. I stormed into the new one fired up and
determined to be believed and was met by no resistance at all, only
concern and help. Within 6 weeks I was sitting in front of a
gastroenterogist, mouth open to defend myself, only to be interrupted by
him and told I had quite definitely got something very wrong with me,
it was no more in my head than the man in the moon and it should have
been sorted years ago.

Like many people who have their gallbladders removed, I suffer from
something called bile salt malabsorption and biliary gastritis which is
basically a fancy way of saying that without anywhere to store bile, the
stuff is sloshing round in huge quantities in innards making them angry
and inflamed and causing terrible nausea and diarrhoea. It's not
serious, but it's not pleasant and the longer you have it unchecked, the
harder it is to control. But none of that really matters. The kindness
and respect and belief of the gastronenterologist confirming what I knew
all along was medicine in itself. That 30 minute consultation did more
for my mental health than the 100 hours of therapy I've had.
All the psychological help in the world isn't much use when everytime
you try to trust yourself and your feelings, it is undermined by
someone's else disbelief. It just makes you more confused, more torn and
feeling under greater attack.

But what happens if the person talking to you knows you're actually
wrong? What if the gastroenterologist had been utterly sure I did have
IBS? What about all those people over the years who knew that my eating
habits were in fact totally fucked up and not normal like I insisted? Or
if you can see that someone is drinking themselves to death? Do you
just take their word for it, show no challenge and believe them no
matter what? Not exactly. Having a belief isn't the same as believing
someone and pushing your belief above all else, even if it's correct,
simply raises the stakes. It makes the person in denial have to spend
their time and energy on battling with you, not dealing with themselves
and looking at their behaviour. It turns genuine concern into a battle
of wills and in repeatedly explicitly telling that person you don't
believe them, you also tell them they can't come to you and talk to you
even things change because you don't trust them. You can express
concern, you can remind the person that you're worried and that they
don't have to put up with things and deserve better, but you will never
help someone get to acceptance faster by disbelieving them. It's
counterproductive.

Nothing pushes my buttons more than that air of disbelief. When you
ask those forensically minded questions about what I did when I was
raped that sound like you need tangible proof over my word, you
disbelieve the biggest thing that's ever happened to me and if you
disbelief the big things in my life, you can't believe the little ones.
You're doubting me to my face and yet expecting me to not only put up
with it but not question you in return. You've put me in an impossible
situation where if I try to prove I'm right, I'm almost trying to prove a
negative. It's like the more you tell someone you're not mad, the
crazier you sound. I can hear myself frantically defending a point so
trivial as to be inconsequential and thinking that I sound mildy
hysterical to myself, let alone anyone else, but unable to stop in a
frantic, out of control way.

It's a trait I'd dearly love to remove from my repetoire. It plunges
me into a vortex of self doubt, anxiety and PTSD, but not only can I
not avoid it, I don't want to lose the knack as it's engrained into the benefits system on which I am completely dependent. To qualify for
sickness benefits, a person (or a panel) will quiz you about the
absolute fucking minutiae of your daily life. A recent tribunal for DLA
saw us spend a good ten minutes on what I'd do with a pork chop and
another five on my tea making skills. No matter how genuine you are,
when someone asks you to go through the making of a hot beverage second
by second, it's impossible not sound like you're lying. Truth does not
respond well to slow motion time and the more you try to correct the
fact it sounds wrong, the worse it gets. It's like trying to walk in a
straight line when pissed. You wobble more when you think about it. For
me it's like being back in the police station. I feel as exposed as when
they were shuffling the photos of my naked body, but the stakes are
higher. It's my home, my sole income, my ability to survive let alone
thrive. It all depends on someone believing me. I'm not optimistic.

I guess all I can do is learn to believe myself. The self fulfilling
prophecy is that after years of being doubted, I really believe myself
or believe in myself. I find it hard to accept that sometimes,
especially in the matters of my own life, I know better than other
people and that generally my instincts have been better than not. But I
don't find it hard to believe in other people. I never apply the same
doubts I have about myself to other victims who come forward and I find
it easy, in fact edifying, to be their cheerleader. And I wonder if
that's how we learn to cope? We throw ourselves into supporting those
whose situations mirror ours and hope that some self belief reflects
back on us and that makes it easier to deal with that constant inbuilt
doubt toward women? Do we gradually create a wave of women who are able
to stand up to that by standing together and sharing belief amongst
ourselves?

I don't know, but I really hope that the discourse round the
Savile victims and the work done by the Mumsnet campaign and hashtag of
#Ibelieveher are starting to change things slowly, but surely. I think
it's obvious that the culture of disbelief creates more chaos long term
than it seeks to calm or ignore and does not serve the majority at all. We need to start reaching out and supporting people who try to tell us things we don't want to be bothered with, no matter what it is. Only then will we not hear the phrase 'just the women' again in a hurry...

Saturday, 29 September 2012

After around 20 years of having chronic fatigue I've lost patience with
it and decided that something must be done. I'm sick of never knowing
how I'll feel from one day to the next or what nice thing I'll be
missing out on next. So when my mental health therapist told me about a
Chronic Fatigue unit at my local hospital, I moved faster to the GP than
I knew I could and asked for a referral. Barely any time later, I was
there and things were beginning to looked at.

Chronic Fatigue is a peculiar condition. Nobody is quite sure
exactly what causes it and half the time, most of them can't even agree
what to call it. It can also be known as ME or Myalgic
encephalomyelitis, but even then some people say they are slightly
different beasts even though I've never got a straight answer of them as
to what the differences are. Neither illness is just being 'tired all
the time' or 'yuppie flu'. In the days of fainting couches and smelling
salts, it was known as 'neurasthenia'. I'm not fussed how other people
describe their illness, but I prefer Chronic Fatigue as I feel it
conveys the jist of my illness to people who know nothing at all about
it (while also being easier to spell) than myalgic encephalomyelitis.

Unsurprisingly fatigue is the main symptom of CFS/ME, but not the
only one. As I said it's not just being tired. Fatigue is more than
simple tiredness. It's more like as if part of your very being has
changed. It's like wading through treacle, like craving sleep in the
same way you do water when dehydrated. It affects mind and body
together. It's unpredictable and cruelly with CFS the fatigue tends to
be post extertional and out of proportion to the extertion. So while a
healthy person would expect to be tired after digging the garden or
swimming 5 miles, a person with CFS can be fatigued to the core after
taking a shower or taking the rubbish out to the bin. Sometimes the body
plays tricks and lets you feel 'normal' while you're doing something
like walking round the shops or having coffee with friends, but a level
of utter exhaustion catches up with you the next day that is like a
hangover, leaving you incapacitated and blurred with a lassitude that
cannot be shifted by sleep or rest.

This exhaustion is garnished with other symptoms to enhance just all
encompassing it feels. Your brain is fogged, your joints hurt, you have
constant headaches, swollen glands, sore throats and a variety of
unexplained digestive issues. For me it's best described as having the
onset of proper influenza where your body feels barely able move and
everything twinges and aches unspecifically while also co-incidentally
having a hangover and a tummy bug while in the first trimester of
pregnancy due to extreme nausea. While this illness won't kill me or
like other people with ME/CFS lead to me being bedbound or needing to
use a wheelchair or mobility scooter, it does make normal living bloody
difficult and render many days of my life feeling miserable, hard to
bear and deeply unenjoyable. The only surprise is that's taken me this
long to lose patience with it all and seek help.

But hang on, didn't I just tell you no one really know what causes
CFS? So how can you seek help? Well, that's just about the most
contentious question in modern medicine. The current treatment for
CFS/ME is based round Cognitive Behavioural Therapy (CBT) and Graded
Exercise Therapy (GET) leading some people with CFS/ME to believe that
modern doctors see CFS/ME as being all in the mind (or at best a mental
illness and at worst a spurious made up invention by lazy people). While
I don't doubt that a lot of people are sceptical about CFS/ME, I see
the CBT route as being more about helping people cope better with a bad
situation. It's used for other illnesses with a fatigue based component
like Post Polio Syndrome with varying levels of success as you would
expect since no two people are the same and no therapy or medicine works
exactly the same for everyone.

However not everyone else agrees. Suffering from
Chronic Fatigue is an odd beast. For a start it's the only illness I
know that no one can quite decide what it is and where one of the
symptoms seems to be competitiveness. Some people say that the illness
is Chronic Fatigue Syndrome and that can include people with Chronic
Fatigue, post viral fatigue syndrome and Myalgic encephalomyelitis (ME).
Some say that it isn't a syndrome, isn't capitalised and is completely
unconnected to ME. Some use the names CFS/ME interchangably. Some think
Chronic Fatigue is all in the mind and that ME is a neurological illness
caused by auto-immune disease or inflammation of the brain or viral
infection or some use it as the basis of HIV denial. No one can agree what the illness is, what it's called or how to tackle it.

This makes trying to research the illness almost bloody impossible.
You know you're desperate when you willingly Google an illness, but
unlike a normal trawl through WebMD or the equivalent, I haven't come
away knowing anything more definite about my illness. Instead I've
mainly read a lot of people trying to claim a name for their illness and
trying to insist that their illness is worse or more real or more
serious or more worthy of research or harder to cure or just different
to the other person's. A lot of ME sufferers prefix that name with
'neuro' and insist that CFS isn't ME and you must have a diagnosis of ME
before you can use the word ME, but not one has been able to tell me
how to go about getting a diagnosis of ME instead of the apparently
vague and seemingly lesser Chronic Fatigue (let alone whether you have
the syndrome or just the descriptor). There's some muttering about how
treatments for CFS don't work for ME, but no definition of the
difference between ME and CFS so you know which treatments to try.

Realising
that the internet isn't the best source of unbiased info, I
turned to one of the ME charities. They elaborated that they also give
help and support to CFS and post viral fatigue syndrome and use the
umbrella term, but don't offer much detail on their site as they
understandably want people to join their site and give them money to
access detailed information, thus helping the cause. Unsure what exactly
I was after, I phoned them to get some advice and was treated to
another dose of competition between Chronic Fatigue and ME but with a
side helping of patronising when I enquired if they had any info about
ME/CFS (their term) and mental health issues? It was spelt out to me as
if I was a 3 year old that while CFS might be psychosocial, ME isn't and
thus isn't a mental health condition (and whisper, is more serious.)
This got my goat for the fact I'm finding it fucking frustrating after
more than the half the years of my life having been turned upside down
to be told I'm not as sick
as (insert correct comparison here) all the time. I also clearly
explained that my mental health had developed separately and was given a
real blast of disapproval that I'm weak enough to be having mental
health issues at all (even though many people with chronic illnesses of
all kinds develop them.) I hung up when I
started getting a disapproving tone about undergoing the treatment of
Cognitive Behavioural Therapy (CBT) at
the Chronic Fatigue unit at King's because 'oh, you've only got a
diagnosis of
Chronic Fatigue, not ME'? as if I'd failed the entrance exam. Not once
since I got sick at 14 have I cried over my health, but tears were
pouring from my eyes after this scolding.

Well, here's the thing. I've actually got a diagnosis of both illnesses. I've
had the diagnosis of ME since 1996 and the one of Chronic Fatigue since
2011. I tend to describe myself as having Chronic Fatigue to people when
I have to explain my ill health because almost no one knows what ME is
and when they do they associate it with 'yuppie flu' and the term gets
me nowhere fast. Chronic Fatigue, while possibly inaccurate, at least
conveys the main problem I have in words people understand. I was
diagnosed with ME 16 years ago and precisely nothing happened. I sat on
the sofa for nearly five years until I felt well enough to enter back
into the life someone in their early 20s should have and apart from
giving it a snappy title, the medical establishment didn't do much until
I went to the CF unit late last year where they gave me a tentative
diagnosis of Chronic Fatigue and began running medical tests alongside
beginning the CBT programme.

I wasn't thrilled. I was hoping for a bit more to be honest that the
not very highly rated online CBT system and withdrawing about a
pint of blood each go. I wanted some fireworks, something definite, some
answers, not just palmed off with tests that had been run before and
therapy that people had suggested was all about trying to convince you
that you weren't really ill. I took the self help manuals they gave me
and sulked gently until the opening session, preparing to defend myself
that I really was ill, even if I didn't know the exact name, and that my
mental health issues were not the cause.

My prickles were flattened immediately by both the calm demeanour of
my therapist and the sheet of blood test results. Far from telling me I
wasn't ill and it was all just in my head, both told me I was
definitely sick and in fact, probably sicker than I'd thought. The blood
tests indicated problems with my thyroid and Vitamin D levels (which
was oddly a shocker to this shade loving SPF wearing agoraphobic) while
flagging up further things to be investigated over my liver function,
potassium levels and heart, my B12 and folate levels (my very high
folate level seems to hint at a B12 deficiency) and my weakened
adrenals. I was temporarily thrilled. Underactive thyroids and low
Vitamin D levels cause fatigue. All this ME/CFS stuff was going to be
irrelevant. I just needed those sorted and I'd be fixed!

So I
began the talking stuff while we waited for the bloods to be re-run as
comparison. I thought it would be irrelevant long term, but I liked my
therapist as a person and was happy to chat to her. Like any good
therapist she could get a conversation going and then astutely pick out
information you hadn't even realised you'd given. She picked up on
several things with me. My routine was poor and I was doing the classic
cycle of boom and bust and draining every drop of energy while I had it
and then lying drained for days afterwards. I also wasn't eating
regularly. And these things needed to start changing.

We began
concocting a timetable so that I could structure my day, rising no later
than 9.30, eating something within an hour of that and resting at 11am,
before eating lunch by 1.30 and resting again around 2, but not
napping, popping outside for at least 5 minutes for fresh air and then
going to bed by 11pm. I was also encouraged to try and stop what I was
doing before I felt the familiar wash of fatigue and rest and return to
it. It was all so very basic and considering I'd been expecting to be
sent to the gym for 5 hours a day, a bit anti-climatic.

And hard.
Really really fucking hard. All these simple basic tasks are rendered
awkward and semi-impossible by fatigue, but add in the very disordered
thoughts I have about food and the depression and anxiety that robs me
of motivation and dynamism, it felt insurmountable. My first 11am rest
was a whirling maelstrom of intrusive thoughts, bleakness and reliving
as my brain swirled and raged and refused to switch off unless I
promised it a long sleep on the sofa. Eating a cereal bar in between
meals when I felt my energy drain was like choking down the removal of
all I believed in. It was ironically exhausting, emotional and
overwhelming. For several weeks I felt physically beyond awful and my
mental health was battered and I felt tearful and emotionally battered
in all ways, reserving all my mental energies for hating Atos with a
passion as the only reason I was sticking with this was to make my
migration to ESA easier later in the year.

Using my usual tactic
of sheer bloody mindedness and inability to reverse a situation, I stuck
at it. I'm not sure for how long as the mental and physical exhaustion
seemed to make time stretch and distort, but several months at least. But then
one day I started to notice something. Instead of struggling with the
emotional hell of resting, my brain knew it was 11am on the dot and I
slid onto the sofa gratefully and there was only calm in my mind. I
found myself eyes closed, deep breathing, mind neither blank nor racing
and feeling utterly refreshed at the end of 30 minutes. It was odd. I
haven't felt refreshed by much for years, but there was a distinct
boost. I felt rested. And with it, I felt my stamina begin to grow and I
felt it less pressing to have to see things through to the bitter end
without stopping. I could pause and return feeling refreshed. I was
getting much more done and having fewer days of highs and lows. I was 'conserving and preserving' instead of 'booming and busting'.

This is not to say that people with ME/CFS would be cured if they rested more, ate more regularly and just tried harder.
Resting and pacing has not cured my underlying illness. It has simply
helped me know my own limits and teach me to work better with my body so
I give as well as take. I have fewer days where I feel energetic and
normal and like I could take on the world and I miss that, but have to
remind myself that the pay off for losing those highs is escaping the
lows. I've begun to see the interplay between my mental health issues
and my physical conditions, but not everyone has that connection to
address. My digestive issues haven't improved one jot and I've just
grown more frustrated by them as I realise just how much they hold me
back. My memory has worsened since I started treatment in February,
leaving me unable to recall things from 30 seconds, 30 minutes or 30
days before at times, but fine on 30 years ago. It has not been a
magic bullet or a cure all and I have found myself wondering how it
would apply to people who are much more incapacitated than me.

But
I am so glad I am doing it. I feel it's enhanced my life hugely and it
has built upon the treatment I had for my mental health issues (I
realised my agoraphobia was also driven by a fear of becoming too tired
or ill when outdoors to get home again or become physically vulnerable.)
I've become more accepting of being ill. Until now I've hidden it and
been ashamed of it because it seems so wrong for someone so young to be
so tired. I've made excuses and obfuscated and lied to people. But the
last few months, I've learned to be honest about my capacities and so
far I've received much more support and understanding than previously. I
thought I was protecting people from my illness, but I was really
telling them I didn't trust them enough to be honest. A huge cloud of
shame has lifted. I no longer feel stupid and like a weak person. I feel
able to stand up and say how ill I am.

And that is why I have
written this (long) piece. I want to be able to stand up and say
something about moderate ME/CFS and current treatment and the
possibility of improvement because I haven't seen it anywhere else. I've
been reading about treatment for ME/CFS for years and only hearing
negative things and it put me off asking for help. I understand that I
am very very lucky not to suffer as much as some people do, but only
hearing about the most severe cases with this competitive air was one of
the things making me repress my illness. I have lost count of how many
times I've been smacked down or dismissed by people with ME/CFS on
Twitter for (small voice) saying 'I can do this' or 'I am one of the 25%
of people with this condition who don't have regular pain'. It made me
feel like a fraud just as much as the people who cast an eye over you
and say 'but you don't look sick...' It made me feel my experiences
weren't relevant or important and that I was letting everyone down by
seeking treatment they all pooh-pooh. And it depressed me to never ever
read anything positive about life with ME/CFS. I needed to hear that
there was a glimmer of hope somewhere out there and I hope that someone
else who feels the same will find this post and see that there is
occasionally some progress for some people.

I've struggled to
write this as I don't want to sound like I'm blaming or bullying people
who are seriously ill. That is not my aim at all and I know how damn
difficult it can be to live with chronic illness. i also know that many
people with ME/CFS have horrific traumatising brutalising experiences with medical professionals and that they have every right to speak about those and that their experiences are not the same as mine.
I also know that many ME/CFS sufferers feel unfairly maligned by press
coverage of the tiny extremist faction who have challenged medical
professionals aggressively over the insistence of only treating the mind
despite the body being ill and not researching the condition properly
and I don't want to feed that fire. But I do feel rejected and
unsupported by the majority of the ME/CFS community I have looked
towards while seeking help and I think as that's my experience, it's a
valid thing to say. I don't expect to get piles of abuse, but I also
don't want to upset anyone and I apologise if anyone feels that way.

But
I started writing this blog as an account of how i was rebuilding my
life from rock bottom and it would be a notable omission not to mention
the improvement in my physical capabilities as well as the mental health
treatment I have had. Feeling more confident in my physical self has
improved my mental state immensely. I've moved away from my hugely
unsupportive GP practice to a new friendly and helpful one. I've seen
the dietician and identified some food sensitivities and have a
gastroenterology appointment for the rest that I've waited 6 years for.
I've been able to work two days a week semi-regularly. I've started
tackling my eating issues better and feeling better about my body after years of hating and resenting it. I see my friends more. I'm writing
elsewhere and getting out more and trying new stuff. I've been able to
do my own benefits claim instead of feeling I don't deserve it. I can
now tell Lord Freud and co from experience that all the telling yourself
you aren't ill in the world does fuck all squared. I'm more confident
and feel less separate from society. And I'm not cured. I'm still
sick. I'm just currently feeling more able to managed my illness. That
doesn't mean I won't relapse or crash in the future. I'm just
enjoying the respite while I have it.

Edited to add: this piece explains well why many people with ME/CFS feel angry about medical progress and press representation without tapping into that competitiveness I feel so isolated by.

Tuesday, 21 August 2012

Eight years ago today, my whole life changed forever as I was raped
for the second time. I can't tell you much about the events as I know
little more than I did the next morning. It appears that after dinner
and drinks with a close friend, my drink was spiked and I was raped
while unaware of what was happening. I don't know where it happened, I
don't know who did it or how many people were involved and I have no
details. Part of that is down to the fact that my memories of it are
completely gone and part is down to the fact that the friend who was
with me lied about the whole thing through her teeth and the rest is
down to the fact that the police failed in every possible way to
investigate it when I reported, preferring instead of go off-road
rallying* and generally rearrange the deckchairs on the Titanic.

One of the things that changed the most for me when I was attacked
the second time was my overnight immersion into the world of rape
culture. Even a rape eight months previously hadn't given me such a
baptism of fire because that was the kind of rape that people could
pooh-pooh and ignore because I was pissed and when I'm pissed people
find me flirty. Plus I was alone in a room with him and I sort of knew
him and I wasn't a virgin and I'd drunk alcohol before, so it was fine. I
was totally asking for it and it was all bullshit anyway. As taster
courses of rape culture go, it was up there but I was too busy sobbing
all the time and being homeless to see the societal message. And of
course, I thought the same as them. It never occurred to me to blame him
for being a rapist, only myself for being there. Self blame is very
common after sexual violence and when everyone around you seems to share
the point of view, you don't think to query it.

But my second rape was different. By society's standards it was a
'proper' rape, real 'rape-rape'. It featured strange men, alleyways and
violence. My garments were rended. Other men rushed to my honour at one
point. Apart from the distinct lack of smelling salts in Soho, it was
textbook and I was (after my initial failure) now the right kind of
victim. I took myself to the police and asked for help at the blackest,
bleakest time in my life and instead of cradling me protectively against
the Big Bad Wolf, they dropped me from the top of the beanstalk. My
prior lack of virtue tainted even this 'right rape' and I was of no
interest to them. They made this clear to me by focusing hard on other
cases of more deserving victims and winning awards for them at the same
time they said they couldn't do their job on my case. More than my
rapist, they made me feel like damaged goods as I had to literally beg
for help, but the more I did the more they realised I wouldn't be as
pliant for them as I had for my attacker and they didn't like the
challenge.

It shocked me to my core. Until then I had no real idea that women
faced these kind of challenges and prejudices when they tried to report a
very serious crime. I'd heard a few mutterings, but had naively assumed
those women were the minority. The one woman I knew who'd been raped up
til that point had had a fantastic experience with the police despite
not getting a conviction and her officers remained in touch for years
afterwards offering support. In my bubble where I knew bugger all, I
thought that was the norm. It was quite the eye opener to discover
otherwise. Frustrated by this lack of support, I felt compelled to speak
out about being raped as if the more people I spoke to, the more I
would realise the naysayers were the minority.

Sadly it took years to find people who were unconditionally
supportive and in the meantime I filled my rape bingo card twice over. I
heard the myths repeated, my character assassinated and found wanting
in a myriad of ways and yet each comment and cutting remark educated me
as to what other women were hearing and had been fighting against for
years. I got a good education in the culture we have that pays lip
service to the idea that rape is a 'very bad thing' but fails to do much
about stopping it or punishing it. It's one of the things that's kept
me determined to to do something (anything) and one of the most
difficult things I've been through, helping as it did, compund the
original traumas. It was liked I'd skipped rape culture 101 and gone
straight to PhD level.

Unfortunately this week is the perfect introduction to rape culture. We
have Julian Assange preening on a balcony and twisting himself in knots
as to why he's above going back to Sweden to answer allegations of sexual assault and rape. Tonight one of his supporters named one of the
accusers live on Newsnight and then justified it by saying his wife is a
rape victim so shrug, he can do whatever he wants. Ignoring the fact
that quite a lot of men have wives who are rape victims because they are
ones who raped them, this is simply outing two women for the price of
one and is a dangerous precedent since many men will know a close
relative who has been raped and may think it gives them carte blanche to
do whatever they like instead of think about the person involved (see
also my old friend Naomi Wolf who reared her head again.)

We also had George Galloway insinuate that Assange was only guilty of 'bad sexual etiquette'
and one didn't have ask permission 'prior to each insertion', leading
me to think that Galloway is the kind of man who thinks as long you ask
if you'd like them to be the cat, they can get away with anything. He's
reduced rape to something as minor as keeping your socks on or hogging
the duvet. But at least he didn't try and bend scientific fact like Todd Akin
who insisted that in 'legitimate rape' a woman's body can do something
nifty to prevent a pregnancy. He didn't elaborate if he thought the
human cervix was really like a heavy pair of curtains on a stormy night
or if rapist's sperm is different and can be turned back at the door
like it's got fake ID, but frankly, I don't know how he'd have sounded
more stupid. Thank god Obama had something vaguely sensible to say in
return and so did the amazing Shauna Prewitt who did get pregnant after a rape.

This rape apologism was all just in the past 24 hours, but we've also had Tony Benn waffling on about non consensual relationships being different to rape,
Ken Clarke rating rapes on a handy chart of seriousness, Ched Evans'
victim being repeatedly named on Twitter under the justiceforched
hashtag and women who opposed this being banned while Ched's crew stay
in the game no matter how many rape threats they issue. The Reddit rape thread was ignored as a learning tool and still written off as lies even
though it was men doing the describing for once. The big punchline at Edinburgh is rape and violence against women. No wonder rape reporting is down in this climate of intense justification, disbelief and lack of anonymity. We're going backwards.

Part of me wishes I'd had a bit of a background warning of what rape
culture would have in store for me when I was reporting, but part of me
knows deep down that I was only able to do it because I had no
expectations to scare me. It was so hard to do when I thought everyone
would believe me. I couldn't have done it if I really thought the
authorities would doubt me. I'd have stayed quiet and although
ultimately it wouldn't have made any difference to my rapist, it would
have eaten away at me. Words are my defence and solace and to be
silenced as well would have broken me in a way that everything else
hasn't. I worry that the Assange fan boys and ill informed politicians
and those who name victims after a conviction are shouting victims down
and silencing them where their attackers couldn't. This is the
consequence of a culture that only takes rape seriously if it and its
victim tick all the boxes. It's imperative that we speak up and that we
don't just leave it to the victims to do it. This is the one time when
saying 'my best friend is a rape victim' does count if you're offering
to be an ally...

*This is not a weird policing euphemism. My investigating officer took six weeks off to go rallying in Australia, leaving my case at the back of a drawer mid investigation. At least when he was on another continent, he wasn't faking the paperwork...

Saturday, 4 August 2012

This may come as a shock to some people who are full of biological
tickings, but I genuinely don't want kids. I just can't picture myself
either pregnant or a parent and to have kids you have to do at least one
of those things. At the age of 33, I've never felt any desire for a
baby. A good friend had her first daughter in March and she's brilliant.
I've spent a few lovely afternoon rocking this tiny trusting little
thing to sleep and hearing her snuffly little breaths as she succumbs.
I've also handed her back and not felt any yearning to have one of my own. My ovaries haven't
called out to me at all, just lain there as sleepy and undynamic as the
rest of me.

Because that's the thing. I could want babies as hard as I want. I'm not
well enough to have them anyway. My chronic fatigue doesn't really fit
in with the rigours of giving birth or months of broken sleep to feed a
baby in the night and from what I've seen of babies, they are unlikely
to fit my current routine of resting for half an hour each time at 11am
and 2pm and 5pm to prevent the incidence of crashing for days of
exhaustion and pain. They are also hugely incompatible with the
medication I take both as foetuses and breastfeeding infants and having
to come off those for 9 months would leave me exhausted by constant
pain, diarrhoea and nausea. And nausea is a given. I've suffered from it
almost daily for 20 years and take stong prescription anti-emetics
three times a day which don't completely stop the nausea, but have saved
from the social shame of boaking in bins on the street. These drugs are
only allowed for up to 7 days in pregnancy and only for hyperemesis
gravida so I'd be cast adrift with just own gag reflex. The thought of
nine months of my regular queasiness brings tears to my eyes. Adding in
the thought of extra pregnancy related vomitiness and I feel quite
distraught, clutching my pill sleeves to me anxiously.

I thought I was doing quite well coming to terms with the balance
between biology and life. Although I've not had the desire to make
babies so far, I have no idea if it might hit like a tidal wave if I met
someone I wanted to spend the rest of my life with, but I've been
preparing myself what to do if I end up wanting something I just can't
have. I'm probably more in the childfree by choice camp, but I can
relate to the childless team too. I might have reconciled myself not
birthing any babies, but will I be lucky enough to meet a man who feels
the same way or will being ill and unable to have kids cause
disappointment there too? Unlike most things you do frequently, you
don't get any better at being disappointed. Each little drip of dismay
builds a bigger stalagtite of pain. Being ill has already cost me my
educational aspirations, a proper career, any chance of a decent pension
for old age, friends, relationships, social life and self confidence.
It's entirely likely it might make it hard to find someone too, so I
find it's easier to just not let youself desire what you can't have.

So when I read things like this catty little article about 'If Maeve Binchy had kids...'
rammed full of the same smug insinuation that you aren't a proper woman
unless you've had kids, I get a surge of energetic rage. No words
irritate me more than 'you're not a mum, you wouldn't understand'.
Setting aside the fact that insultingly seems to suggest being a dad is
inferior to motherhood, it's also utter horseshit. Some people find that
becoming a parent changes their emotional landscape and they have a
vulnerable side and a sense of feeling they never expected. It's kind of
inevitable that having kids is lifechanging, even just practically. But
it does not give you the monopoly on emotional intelligence and
feelings and it's both wrong and privileged to say it does.

Plenty of people get to understand life and themselves on a higher level
long before they have babies. Some learn from childhood as difficult
but not unheard of things happen like losing a parent or sibling or
grandparent occur. Abuse and bullying teach children an adult view of
the world and their own vulnerability they shouldn't know so early. We
experience commitment and pain and loss and achievement through our
teens as we study, work, fall in love, build friendships and have life
change as we grow up. Adulthood brings more life experiences for most
people as often your role as a child changes to an adult who cares for
other family members and you see their vulnerabilities and needs and
find a way to balance them up with your needs. Life happens with all its
ups and downs and many people have responsiblities for themselves and
others. Divorce, bereavement, family breakdown, ill health, rape and
mental illness has taught me plenty about myself and " the feelings of
intense vulnerability..., passionate love, joy, bewilderment and
exhaustion" women can experience. If you haven't encountered or
thought about these things before you have your first child, I think
you're either having babies far too young or you've lived a emotionally
sterile life and you're the one who knows little.

"No matter what your experience of adult love, there is nothing as
strong as
the bond between a mother and a child" says Amanda Craig, missing the
point that most people will have been the child in that mother child
bond before they become parents themselves and must fundamentally know a
fair bit about its power and emotion before they start the bond anew.
For her statement to make sense, she must be prizing the mother part of
the bond more and even then putting the caveat of biological motherhood
to keep out the riff raff who didn't give birth as if that's somekind of
velvet rope we must all clamour to stand behind. To me you cannot exalt
motherhood by leaving out those with maternal instincts. Plenty of women
who haven't given birth to a particular child mother them. There are
legions of grandparents who sacrifice their retirement to help raise
grandchildren, childless aunts, relatives, stepmothers, godmothers,
family friends, adoptive and foster mothers who love the children in
their lives unconditionally and offer huge sacrifice and engagement over
the years despite a lack of a mother child bond borne of birth. These
are the women elbowed out by the change from Mothering Sunday to
Mother's Day and pushed further to the sidelines by women such as Craig
painting such a narrow picture. And that's before we look at the lack of
men in these kids' lives that this diktat creates.

Craig is crass and childish in her article. Not only was it published
the day Maeve Binchy was buried and used as a dig to suggest this warm
wonderful woman known across the world but deeply loved in Ireland was
somehow personally and professionally lacking, it came across as Craig
attempting to show off. The whole thing could be read as 'look what I've
got!' and it is spectacularly charmless. I imagine Craig to be a 'smug mummy'
after reading this, that breed of woman who becomes subsumed in her
children to the point that she no longers functions as a separate
person, relegating everyone else to bit parts and orbiting round her
offspring. I admire the commitment, but in the same way that I question
being zealous elsewhere in life, I don't think it's particularly healthy
and I think that in defining yourself entirely in relation to another
person instead of yourself it is the opposite of "bring[ing] about a
deeper understanding of human nature" but a way to narrow your horizons.

But what would I know? I've never used my womb for anything apart from
storing some hormones and plastic and my ovaries have been on sabbatical
since 2001. Craig insinuates that I and my ilk have achieved nothing
and are silly and shallow. One of my dearest friends is due to give
birth to her first daughter next month and I am ridiculously excited,
planning to fuss over her all her life and show her that love and
support also comes from people who aren't related to you and that its an
achievement and a valuable life skill to be able to charm impress the
majority of the planet you aren't biologically connected to. I won't be
passing comment on her mother's parenting skills and she won't be
passing comment on my lack of them. We'll probably have much more time
to do stuff that way if we join forces instead of trying to split
society like Craig insists on attempting to do....

Sunday, 29 July 2012

Trigger warning: This post deals with the Reddit thread featuring confessions of rape and my responses to it. Please be aware of that before reading either it or linking to the original thread. I really really debated whether to publish this or not in case it ended up being more triggering than the original thread. But I decided to after reading this piece on the Guardian today where a majority of people decided to disregard the information because it's not the right kind of site (where have we all that line before?) to talk about it on, leading to a situation where they don't believe what victims say about rape or self confessed rapists say about rape so keen are they to pretend rape isn't an issue. I think the thread is genuine. It's too similar to accounts I've heard and read from victims and I just don't feel it can be brushed aside so easily. I decided the opportunity for education was there instead of just going 'la la la' a lot. You may decide this is an excellent opportunity to go make tea and eat cake instead. You know what's best for you.

Friday, 27 July 2012

This week we had deja vu when West Mercia police popped up with their
cliche campaign saying the same old 'don't drink too much or you'll do
something you regret' message. This is incredibly offensive. I
didn't actually do anything when I was raped, except try very hard to
stay alive and contain the immediate suffering. Being raped is by its
very nature not an event you are active in. It's passive, because you
don't want it to be happening. Therefore telling me not to do things
I'll regret in this context is like telling the wind not to blow.

And regret is not really the word I'd use about rape. I regret
wearing shoes that make my feet look like trotters. I regret that 90s
purple iridescent lipgloss from Miss Selfridge. I reget nipping to the
loo, missing the nightbus and having to wait 40 minutes. Not once in the
8 years since I was raped and I've lain awake at night riven with
misery or trying not to cry, has the word regret seemed adequate. It
seems too meek, too minimising. The fact they've used the idea of
'regretful sex' and rape in the same sentence just heaps insult upon
injury.

Regretful sex is no bloody concern of the police. Waking up and
realising the hot guy from last night actually wears loafers and has a
cuddly golf club on his bed does not need 999. It needs lots of tea and a
self deprecating anecdote with friends. Going on highly scientific
discussion with friends, regretful sex has usually become amusing by the
time you've left the situation and had a shower. I'm still waiting for
the moment I find being raped even remotely titterworthy. There's no
correlation between the two and it's extremely detrimental to suggest
they go together as if rape is just sex you regret a lot and not an
actual criminal offence with serious consequences.

It's the kind of myth that mutates into victim blaming on juries
especially and like everything else about this campaign, it ties into
the idea that rape is something that happens because of alcohol and
because a man and woman were left un-chaperoned after being out and 'he
said, she said'. It ignores the fact that most rapes do not happen like
this and that 80% of rapes happen with someone you know and that
you're most likely to be raped in your own home. And for all the 'victim
warning' that these campaigns profess to
offer they actually leave women more vulnerable in many ways because
they teach women to look for rape in only one aspect of their life, but
not to say 'it was rape' when their ex demands sex when he comes to
collect his CDs after you've split or your new squeeze refuses to use a
condom and keeps going or your husband hits you unless you agree.
Instead of being able to clearly identify those scenarios as rape, women
blame themselves, feel guilty and stay frightened and unable to speak
out at all, often remaining trapped.

But being raped 'the right way' according to these police posters,
still isn't a guarantee that you'll be taken seriously if you've
committed some kind of infringement according to their helpful list. Partly because it's been knocked
into me since I was about six to be careful because I'm a woman and
partly because it seems natural, I did everything on that list on a
night out. I didn't drink while stressed or tired, I ate a meal, I
ordered a glass of water, I didn't leave my drink unattended, I drink
incredibly slowly anyway and I'd planned my route home in detail. I was
still raped. Because the barman spiked my drink. In fact he spiked my
glass of water. If I'd quaffed my drinks a bit faster, not bother to
rehydrate and just drunkenly lurched to the bus stop, I'd have been
fine.

Actually rehydration is my nemesis. I was making a cup of tea the first
time to make sure I didn't wake up with a headache after a few drinks in
my house just before Christmas when my rapist snuck into the kitchen.
We all thought he'd left, everyone else had gone to bed and it turned
out he'd been hiding. I was only up because I was waiting for the kettle
boil. If I'd merrily staggered down the stairs to bed singing Santa
Baby and keeping everyone up, I'd have been fine. But that peppermint
teabag put a target on my back and the quiche I'd had for dinner didn't
protect me at all in the end. I was still raped.

Of all the women I know who have been raped (and sadly that's quite a
list), none of them would have been helped by that checklist or the
knowledge of self defence. Even the two who had been drinking enough to
admit they were quite pissed wouldn't have been helped by alternating
their drinks or planning their taxi route, because they were asleep when
they were raped anyway. The only thing that would have kept them safe
is if their rapist had kept himself to himself. The same with the women
who took John Worboys' cab because they didn't want to risk an
unlicensed mini-cab or the woman who asked a friend of their boyfriend
to give them a lift home because she thought it would be safer than walking
alone. Being drunk may make your reactions slower, but in my experience,
rapists don't actually give you that much warning they are going to
rape you. It's a crime that relies on surprise and fast reactions don't
always save you. For every sober reaction where self defense floods back
to you and adrenaline makes you superhuman, there is the secret
response no one ever mentions.

Humans don't just respond with fight or flight. There's also freeze.
Sometimes the human brain in its primitive self preservation state
tells you that you can't out-run this sabre toothed tiger. You've just got to
go still and hide in the undergrowth til the threat stops. You have no
control over this. Your body and brain take over and do this because
it's the best way to stop you getting physically hurt or dying. It's
just another way to protect yourself and it's totally normal. I'm never
usually backwards about coming forward when I am displeased and expected
I'd scrap like a mad March hare in a bag. Instead I completely froze.
Even though it probably saved me from really serious injury, I blamed myself
for years for not fighting back because I thought I'd done it wrong.

And that's the problem with these police campaigns. They read like
an etiquette list as if there's a correct way to be raped rather than
rape being wrong. Victims measure their reactions by these lists. Juries
make their decisions based by them. The police and CPS investigate to
certain standards because of these lists. And rapists get given a handy
cheat sheet of how to spot a suitable victim. Some women are more vulnerable, especially former sexual partners, sex workers and women
with mental health issues or disabilities, but these 'don't drink'
campaigns don't teach them or the people round them protection, they
just seek to highlight ways that can be manipulated further. It
reinforces the idea of the 'right rape victim' and reduces the idea of
rape to sex when most people know it's really about power. By making it
seem like an inevitable consequence of a night out it diminishes the
severity and hides it behind the bogeyman of 'drinking'.

Drinking actually means bugger all as a statement of fact. Saying a
rape took place after drinking tells me nothing much. Who was drinking?
Was it the attacker or the victim or both? How much where they drinking?
Where they drunk? If I've had a glass of wine with dinner and then get
the bus home, walk through my estate in the dark and am raped, it could
still be said I'd been 'drinking', but it doesn't really add any
information. Just using that word doesn't mean I was roaring drunk and
gusset up in the gutter but it's often said in such a way to attribute
blame as if when women are drinking it means being incapacitated, but
when men do it, it's normal. It's just another tactic like like the
newspaper telling you what colour hair a rape victim has to belittle the
event and make victims seem like statistics rather than people.

The statistics that count are the conviction rates and that's where the
police should be focusing their efforts. West Mercia (on the most recent
figures I could find, dating from 2007) have a conviction rate of 4.5%. At least South Wales, who ran a
similar campaign last year, are at 7.1%. I'm not suggesting that the
police don't try and prevent crime before it happens. That's common
sense after all. But I suggest they take a tack like the 'Know the Difference' campaign running in Lambeth, South London which addresses
the potential perpetrators and their peers with a non judgemental ad
campaign about a variety of sexual violence outside the home displayed on public
transport, licensed premises and outside clubs and pubs. It combines it
with training barstaff, bouncers and police in the nuances of rape and
consent. This has been combined with new facilities for women needing
help, sits along a council campaign about gendered violence in the home
and has resulted in reports being up a third as women feel less judged
to come forward about rape and sexual assault (which is often seen as
less important because of the focus campaigns like West Mercia's have on
rape only.)

It might seem a bit insulting to some men that they feel they are being
tarred with the same brush as rapists when they would do no such thing,
but it opens a dialogue and helps erode rape myths that are so ingrained
around women, sexual violence and alcohol that even the government
funded Criminal Injuries Compensation Authority routinely docked women's
pay-out after rape if alcohol was involved until a just few years ago.
Keeping those myths going and suggesting that women wouldn't be raped if
they just tried harder to stick to these lists however is a much bigger
injustice and one that destroys many women's lives and prevents rapists
from being punished properly because women fear repeat victimisation on reporting. Women can't do anything about being women
so we need to tackle the societal changes around rape instead and make change that way.

*This post originally appeared at The Vagenda in rebuttal to a previous less favourably received piece on the West Mercia campaign. They offered me the chance to write something when I complained on Twitter and I thank them for that. The original piece was upsetting, but it's good they didn't go on the defensive and allowed for a piece to educate.

Sunday, 22 July 2012

Last week, I had a day out with a dear friend. We took the tube, went to
the West End, picked somewhere for lunch, stopped for a coffee. All
very nice, apart from the fact that the day out was actually because I
had a Disability Living Allowance tribunal in Fox Court in Holborn. Not
quite the treat you'd thought...

I applied for DLA in December 2010. I've been ill and off work since
2003, but some bad benefits advice in around 2005 meant I thought I
wasn't eligible to claim DLA that whole time. While that led to me
losing out a lot of financial support, it was probably also the catalyst
for wanting to become a benefits advisor and make sure other people
don't get caught by poor advice. I'd made the classic mistake of
thinking I had to have carers to get DLA rather than being made aware
that it's about your need for care, rather than the actual provision of
it that qualifies you for the benefit.

After some job training about other benefits, I realised I fitted
the criteria and got a form. Slightly daunted by the size of it, I got
out my favourite pen and started filling it out in my best handwriting,
thinking how hard could it be? Turns out, if you aren't blessed with
government department bureaucracy style thinking superpowers, attempt to be positive
about your conditions and your life and don't usually have someone to help and thus
can't picture how that would work, it's akin to trying to make the
Enigma machine singlehandedly using two bog roll middles and a cornflake
box. The form is a masterpiece in asking a question one way and
expecting the answer another. I ploughed through it, making all the
classic errors everyone else does when they see one for the first time,
especially if they have mental health needs as the prompts are all
physical related.

I said I didn't need help with my medication because I didn't take
psychiatric medication, but didn't know to say that I didn't take them
because I couldn't cope with them, couldn't get them easily due to my
agoraphobia and because of the horrible side effects. I said I had no
night needs because I didn't need anyone to physically help me into bed,
not realising that i should have mentioned not being able to sleep
without the TV on or the nightmares and reliving of PTSD. I didn't
explain how someone could help me day to day because I don't have anyone
to do it. I just wrote down what I thought I needed and felt like I'd
been hit by a truck doing it. Seeing my life in black and white almost
reduced me to tears at a time when I was being taught to be positive
about it. I did the form wrong and it was still one of the hardest
things I've done.

Surprisingly enough they awarded low rate mobility as I need someone
to guide me when outdoors due to agoraphobia, but said I had no care
needs. Thrilled to be around £20 a week better off and passported to
other things like a Freeview upgrade and some help with energy bills
(this depends on your supplier), I didn't query it. I started my
volunteer role and began learning how to fill out DLA forms like a
demon. 8 or 9 months later, able to fill out a full form in under an
hour and half and not having had a single case turned down or need to go
to appeal, I realised I was missing out because I definitely fit the
care criteria myself. I asked for a review form to do a supercession and
see if I could get my award altered.

Taking more than 4 hours to do it, I girded my loins and waded
into the world of being honest about how crap life is most of the time. I
backed it up with prescriptions, social worker reports, Community
Mental Health Team reports, a full psychiatric report from from a
psychiatric hospital, two letters from therapists and medical notes in
some cases going back 15 years. They turned me down. I appealed. They
still turned me down. A tribunal was the only way forward.

The waiting list for tribunals is evergrowing as both Employment
Support Allowance and DLA awards seem to be modelled on finding the Higgs Particle. I asked for mine in October 2011 and it was set for 12th July
2012. Technically this gave me ages to collect further evidence for my
case, but in reality meant I just sort of forgot it was happening
because it was so far in the future. The one thing I did in that time
was after discovering the inaccurate, incomplete and biased report my GP
submitted to DLA was move GP to one who doesn't think I'm a big
malingerer. Unfortunately I dithered about if for so long I ended up
doing it too close to the tribunal and put myself in a situation where
my new GP doesn't have my notes and couldn't write me a supporting
letter.

Trying to comfort myself I'd saved up £45 on that at least, I
gathered up the evidence to show my condition had worsened and that I
had had to be referred to specialist services and found someone to come
with me. I needed someone reliable and able to balance practicality with
being comforting and who wouldn't look horrified by the details of my
life I usually prefer to keep hidden. Turns out I am lucky enough to
have a choice of people to ask, but it had to be my friend A who asked
where was good for lunch nearby and gave me something else to focus on!

I sat down and went through my appeal bundle, sending my supporting
evidence back to them by recorded delivery and picking out where the DWP
were wrong or had ignored evidence or points of eligibility. Three A4
pages of detailed notes later I felt ready to take on the world. I spent
more time choosing what to wear, eventually going for the obvious
choice of what I would normally wear when I left the house. For me that
included my mask of make up and I made a mental note to explain the
healing power of eyeliner to them. We made our way to Holborn in good
time and I realised I was actually incredibly unpleasantly
overwhelmingly anxious (seriously, after 8 years this still surprises
me...)

Greeted by a receptionist who resembled Dolly Parton crossed with
the duffled coat dwarf in Don't Look Now who was annoyed I'd forgotten
my letter, my first reaction to the tribunal was to run far far away. A
quick trip to the toilet reminded me it would be awkward to explain to A
why I'd pissed off and left her in a waiting room, I went back. The
clerk of the session came out and introduced himself and the panel. I'd
been expecting 2 on the panel, so was thrown by the fact there are 3.
You get a doctor, a tribunal judge and a disability expert in a DLA
tribunal, but only the doctor and judge in ESA tribunals. I barely had
to wait before we were off down the glass corridored rabbit warren and
delivered to a large bright room with 3 people waiting.

Pleased to see one was a woman, they explained that they are
independent of the Department of Work and Pensions and are from the
Ministry of Justice. They outlined the judge was there for fairness
while the doctor would ask about my health and the disability expert
would assess how the law of the benefit fitted in with those answers.
And we were off. The female doctor started and I found her pleasant with
an air of neutrality but just enough interaction to be aware she was
human. I did find it odd that she asked me about all my illnesses and
conditions, except the PTSD and everything seemed swerved away from that
elephant in the room for some reason I couldn't quite fathom.

I found the questions from the disability advisor harder to deal
with, party because he looked just like the coelacanth at the Ulster
Museum, but also because it was hard to answer these with my 'sick
person' head on than my 'advisor' head. Part of me knew the point of
eligibility he was raising and wanted to highlight it, but the rest of
me just wanted to kick my heels and complain like a toddler til someone
gave in. I was also massively taken aback to start crying when he asked
me about my night needs. I've sat and discussed the nightmares and
reliving of my rape with plenty of experts over the years, but I've
never shed a tear before. It was like being stripped bare and asked to
beg. I can't remember the last time I felt so exposed and I really
thought at one moment I wasn't going to be able to pull myself back
without collapsing.

But throughout that moment and the rest of the hour long tribunal,
the people involved were polite, listened to me without patronising or
interrupting and treated me like a person not an inconvenience who fucks
up their nice statistics by being alive. They offered me
professionalism and allowed me a chance to speak like an adult with a
brain in my head. After years of contact with the DWP and Atos, this
shocked me and disarmed me. I couldn't read their responses. Where they
luring me in? Where they really being nice? I couldn't be sure to trust
them and I left feeling unsettled and unable to assess how the tribunal
had gone.

DLA tribunals don't usually give decisions there and then, unlike ESA
ones and I had to wait until Saturday morning's post to get my result.
They awarded me low rate care for two years, backdated to last September
and extended my low rate mobility for a further year, meaning the two
award lengths match for renewal. It also means I don't have to do my DLA
in the same month as my first ESA50 which is a nice bonus. I was
originally pleased to see the award, although pissed off that they'd
discounted my night needs, thinking I cried for you and you ignored it.
But then a sense of profound upset came over me.

I've been sick pretty much constantly for 20 years and still it
suckerpunches me when experts agree that I'm ill. I find it easier to
say to myself that I'm just not well today than accept I'm
probably never going to get completely well again or have back all the
things being ill has cost. To see an agreement that I am very unwell in
black and white knocked me and made me feel that for every progress I do
make, it's really just me kidding myself. I'm no closer to holding down
a full time job than I was two years ago. I'm still sick and struggling
despite all the therapy I've done and I can just picture myself doing
the tribunal roundabout for years to come. It felt heartwrenching and I
wobbled all week, only perking up slightly when the DWP paid the
backdated amount in my account this week.

Money doesn't buy you happiness. It doesn't buy you health, but it does
make it easier to pretend life is normal and for that extra support I
thank the tribunal for seeing sense and standing up for us when the DWP
refuses to. It's been a long 10 months, but I think I'm glad I did it if
only to remind myself what wonderful friends I have and to treat myself to the proper Miss Marple box set I've been eyeing up for years...

(I also like to take this moment to tell the Daily Mail to ram their filthy rag somewhere that means they have to start explaining their toilet needs to someone on minimum wage who hates sick people and see how easy 'just' filling a form in is...)

About Me

I started this blog as a way to talk to myself as I worked my way toward rebuilding my life after experiencing two rapes. Then other people started reading it too and I realised talking about myself wasn't enough and expanded it to having an opinion on everything, especially women and sexual violence. I want this to be a safe welcoming space so please assume all posts need a trigger warning for rape, PTSD, general trauma related crappiness and bad jokes. I'm thrilled anyone reads it and want everyone to feel welcome, including men who may have been victims. I talk about rape from a woman's perspective as that's my own experience, but don't want to exclude anyone who doesn't feel their experience is the same. Feel free to browse or make comments. These are moderated so any apologist crap hits the bin, but not to boost my ego. Anonymous comments or pseudonyms are fine by me since I only blog anonymously myself. Thanks for reading. I do reward you with the odd lighthearted post as well...